Disabled Teens Social Experiences Research looking for Families

http://groups.yahoo.com/group/DisabledTeenResearch/

Hello.  My name is Amy Sorensen and I am a graduate student at East Tennessee State University and am working on my thesis. I am also the parent of a young adult with a physical disability. As I have watched her grow, I found that her social experiences are very different from other kids her age. I am researching the social experiences of young people aged 12-18 with physical limitations. This will be the first research focused on this and will hopefully help communities,families,and schools provide better opportunities for these young people.

Interested familes and individuals may contact me directly at 423-523-2620 or zams32@imail.etsu.edu

I have also opened up a yahoo group for potential participants to have a central place for information, and in the event that it is difficult to get the materials out.  The web address for this group is: http://groups.yahoo.com/group/DisabledTeenResearch/

My daughter is 11 years old and was born with spina bifida.  I had wonderful information about what to expect physically and cognitively from the very beginning.  What I didn't know about was how different her social experience would be from my non-disabled children's.  As I watched this unfold, I searched the research literature.  I found nothing.  It seems the scientific community has never truly listened to adolescents with disabilities.  Policy and programs are usually created based on sound research. I want these things to reflect the actual (vs. the perceived and largely assumed) needs and concerns of young people with disabilities.  Thus, this research project was born.
Statistics on the quality of life for adults with disabilities in the US are quite disturbing.  People with disabilities are more likely to live in poverty, be under- or un-employed, and less likely to go to college or feel very content with their lives.  Many studies have shown that life outcomes like these can often be traced back to experiences and identity formation during adolescence.  I think that it is important to look at this period in the lives of people with disabilities.
This study will focus on factors involved in adolescents' social identity formation and social experiences.  The survey will ask the young people how they are feeling about themselves, those around them, and their communities.  I will look at whether or not they have a feeling of belonging either to the community as a whole or a culture of disability.  I will also be asking questions about the quality and frequency of interpersonal relationships with others in their peer group.  Another important aspect of this study is to find out whether or not these young people are being offered as many social opportunities (both at school and in the community) as those without disabilities.  Basically this study seeks to get a broad overview of the social experiences of young people with disabilities.
This study is geared toward young people (aged 12-18) with a physical disability but no significant cognitive delays.  This restriction is in place to protect students with significant cognitive delays, as I am not trained to accomodate their special needs in this type of an endeavor.  If parents are unsure whether or not their child meets these criteria, they can contact me individually and we will decide.  Basically the student should be able to negotiate and understand their social setting at an age-appropriate level.
This is a computer (internet) based survey.  However, any person wishing to participate who cannot utilize this technology, will be accomodated on an individual basis.  Every attempt will be made to offer the materials in the family's first language.  Each participant under the age of 18 will need the consent of a guardian to participate.  This summer will be spent attempting to get participants and finalizing Institutional Review Board acceptance.  At the end of the summer, I will begin collecting consent forms.  The research itself should begin sometime in September and continue for a period of several months.  The results and write-up period will begin in January 2007 with an expected completion time of Spring 2007.
Most academic and scientific research sits on a shelf, collecting dust after academia has had its way with it.  However, I am a proponent of community based research, in which research is applied and utilized by the general public and not left in the hands of unconcerned scientists.  As part of this study, I have made plans to create training material based on the findings.  These materials will be made available to organizations, parents, young people, schools, policy-makers, and all other interested parties, free of charge.